News
News
Norwegian funds
Health Programme
EEA Grants 2014-2021
News and updates from the project
Educational leaflets for parents and the general public can be found in the section PROJECT OUTCOMES/Letters. The leaflets created are now related to visual impairment and dental hygiene.
Educational leaflets for parents and the general public can be found in the section PROJECT OUTCOMES/Letters. The leaflets created are now related to dental hygiene.
On the occasion of the Rare Diseases Day, Prof. Milan Macek, MD, DrSc., Head of the Institute of Biology and Medical Genetics at the 2nd Faculty of Medicine of the Charles University in Prague and Motol University Hospital, spoke in Studio 6 on Czech Television about the possibilities of diagnosis and treatment, for example for cystic fibrosis. He also mentioned the situation in excluded localities. (51. min., 28. 2. 2023.)
Although equal access to health care in the Czech Republic is ensured by the legislation in force, in many cases it is hindered by barriers such as low health literacy, as well as local, geographical and financial inaccessibility of health care facilities. Not all people have the same living conditions, which is why the Czech Republic faces significant inequalities in health and healthcare. Among the most vulnerable groups are people from socially excluded localities, who are often Roma. However, there is a lack of data that would reveal more about the issue.
On the occasion of the Rare Diseases Day, Prof. Milan Macek, MD, DrSc., Head of the Institute of Biology and Medical Genetics of the 2nd Faculty of Medicine of the Charles University in Prague and Motol University Hospital, made an informative video on the specifics of rare diseases for Motol University Hospital.
“WE ARE IN THIS TOGETHER” is the slogan of this year’s Rare Disease Day. This year, the day will be commemorated again on 28 February in more than 100 countries around the world. Our goal in the Czech Republic is to ensure that every rare patient receives the right diagnosis, care and treatment. There are many people helping families on this journey: doctors, nurses, assistants, therapists, special educators and others. All of these professions are demanding and require understanding and respect for what the patient and family need. At the same time, we believe that we patients can bring our own experiences to this relationship and contribute to improving the quality of life for our precious patients. We are in this together.
You can find the video HERE in the link
source: ČAVO
Awareness of rare diseases among GPs is growing. Almost three quarters of GPs have a patient with a rare disease in their clientele. This is according to an Ipsos survey conducted for Takeda in the Czech Republic and the Czech Association for Rare Diseases (CAVO). Its results were presented by the chairwoman of the CAVO, Anna Arellanesová, on Tuesday at a symposium organised by Zdravotnický deník on the occasion of International Rare Diseases Day. This falls on the rare day of 29 February, and outside of transitional years the world commemorates it on 28 February.
Prof. Milan Macek organised an international conference on behalf of the National Coordinating Centre for Rare Diseases – Institute of Biology and Medical Genetics of the 2nd Faculty of Medicine of Charles University in the framework of the Czech Presidency of the Council of the European Union.„Towards a new European policy framework: building a future for rare diseases“
The outcome of this conference was a “Call to Action” supported by 22/27 countries of the European Union covering more than 82% of the population of the European Union.
Simultaneously with the international conference “Towards a new European policy framework: building a future for rare diseases”, Prof. Macek co-organized a workshop within the Czech Presidency of the Council of the European Union dedicated to the development of newborn screening “Early diagnosis of patients with rare disorders in the EU: crucial role of the newborn screening”, as a satellite workshop of the celebration of the 200th anniversary of the birth of G. J. Mendel in Brno.
Educational leaflets for parents and the general public can be found in the section EXHIBITS/Letters. The leaflets produced cover hearing impairment, autism spectrum disorders, genetic kidney disease, hereditary cardiovascular disease and early diagnosis of rare diseases.
A total of 14 videos produced by experts on the issue of diseases affecting not only the Roma community. Educational videos for parents and the general public can be found in the section OUTPUTS/Videos.
Launching the project website
We will continuously update the website for the project.
Project:
Increasing the availability of targeted prevention and early diagnosis of specific communicable and non-communicable diseases in selected socially excluded localities with Roma communities
Registration number: ZD-ZDOVA2-001
We want to help
the Roma community
and excluded localities
